New Fundraising Guide Now Available
We have just released a new improved fundraising guide. It’s packed full of information to help you plan your next fundraising event. Download Fundraising Guide We hope you find it useful, please contact us…
Morven’s Story
Morven is a brave 5 year old girl who has cystinosis. Please watch this video for an insight into her day to day life. She is daughter to Cystinosis Foundation UK treasurer Neil Hutchison and…
Rare Disease Day 2015
28th February 2015 is the eighth international Rare Disease Day, which takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general…
Luka Prepares for London Marathon
Luka Babiy, whose sister has cystinosis, is running the London Marathon this year despite never having previously ran a marathon. We are extremely grateful to Luka for choosing to raise money for us in this…
Tina Biss Shares Her Tips for Parents
We’re pleased to be able to share with you some tips written by Tina Biss for parents of children with cystinosis. Tina has a (now grown up) daughter with cystinosis and hopes that by sharing…
Become a Trustee
The Cystinosis Foundation UK has a small dedicated team of trustees that run its operation, these trustees are all volunteers and carry out their duties in their own time. To keep the charity moving forward…
Artwork Needed for Art Exhibition
Cystinosis Research Network is looking for art contributions from cystinosis patients, to be part of a travelling art exhibition. This includes all types of creative work such as photography, poetry, music, painting and sculpture. You…
National Designation Survey – Your Chance to Have a Say
We need your feedback! A new model of care for cystinosis has been proposed as part of the national designation application to NHS England. Your feedback is vital, the model of care needs to suit…
Have You Had a Flu Vaccine?
It’s that time of year again, flu season! The NHS recommends that people with long term health conditions, including cystinosis, have a flu vacinne. Patients who have had a transplant are at increased risk of…
Old Car? Scrap It for Cystinosis
We have recently joined a website called Giveacar, which collects old cars, scraps or auctions them, then donates the proceeds to charity. Do you own a vehicle that you want to sell or get rid…